title: Researchers' views on return of incidental genomic research results: qualitative and quantitative findings.
abstract: OBJECTIVE
  Comprehensive genomic analysis including exome and genome sequencing is increasingly being utilized in research studies, leading to the generation of incidental genetic findings. It is unclear how researchers plan to deal with incidental genetic findings.
  
  
  METHODS
  We conducted a survey of the practices and attitudes of 234 members of the US genetic research community and performed qualitative semistructured interviews with 28 genomic researchers to understand their views and experiences with incidental genetic research findings.
  
  
  RESULTS
  We found that 12% of the researchers had returned incidental genetic findings, and an additional 28% planned to do so. A large majority of researchers (95%) believe that incidental findings for highly penetrant disorders with immediate medical implications should be offered to research participants. However, there was no consensus on returning incidental results for other conditions varying in penetrance and medical actionability. Researchers raised concerns that the return of incidental findings would impose significant burdens on research and could potentially have deleterious effects on research participants if not performed well. Researchers identified assistance needed to enable effective, accurate return of incidental findings.
  
  
  CONCLUSIONS
  The majority of the researchers believe that research participants should have the option to receive at least some incidental genetic research results.
authors.affiliation: Department of Psychiatry, Columbia University Medical Center and NY State Psychiatric Institute New York, New York, USA.
authors.forename: Robert
authors.initials: R
authors.lastname: Klitzman
authors.forename: Paul S
authors.initials: PS
authors.lastname: Appelbaum
authors.forename: Abby
authors.initials: A
authors.lastname: Fyer
authors.forename: Josue
authors.initials: J
authors.lastname: Martinez
authors.forename: Brigitte
authors.initials: B
authors.lastname: Buquez
authors.forename: Julia
authors.initials: J
authors.lastname: Wynn
authors.forename: Cameron R
authors.initials: CR
authors.lastname: Waldman
authors.forename: Jo
authors.initials: J
authors.lastname: Phelan
authors.forename: Erik
authors.initials: E
authors.lastname: Parens
authors.forename: Wendy K
authors.initials: WK
authors.lastname: Chung
mesh_terms: D000328:Adult; D003625:Data Collection; D003657:Decision Making; D005260:Female; D036281:Genetic Research / Q000941:ethics; D005820:Genetic Testing; D023281:Genomics / Q000941:ethics; D006801:Humans; D033162:Incidental Findings; D008297:Male; D008875:Middle Aged; D019683:Penetrance; D012108:Research Personnel / Q000193:education / Q000941:ethics / Q000523:psychology; D014481:United States